Data Consortia

Abstract

Today, web-based companies use user data to provide and enhance services to users, both individually and collectively. Some also analyze user data for other purposes, for example to select advertisements or price offers for users. Some even use or allow the data to be used to evaluate investments in financial markets. Users' concerns about how their data is or may be used has prompted legislative action in the European Union and congressional questioning in the United States. But data can also benefit society, for example giving early warnings for disease outbreaks, allowing in-depth study of relationships between genetics and disease, and elucidating local and macroeconomic trends in a timely manner. So, instead of just a focus on privacy, in the future, users may insist that their data be used on their behalf. We explore potential frameworks for groups of consenting, informed users to pool their data for their own benefit and that of society, discussing directions, challenges, and evolution for such efforts.